Here I am with lots of random thoughts.
When disability gets to me and a soapbox rant
What my kids ages are
So I have a few things on my mind. One has to do with a failed outing the other day as it relates to disability. You see, I decided to pack up the kids and go to the local YMCA to tour it. I prepared a snack and a meal for each of the boys, changed their diapers, took Jordan to the bathroom, had the girls go to the bathroom and find their shoes, dressed the boys in something besides pajamas, had the girls grab a snack from the cupboard, planned to buy fast food for the girls’ and my lunch, packed a diaper bag, grabbed a water bottle and…. left.
The YMCA offers 2 hours of free child care each day so parents can exercise and socialize. I figured I could keep Jordan with me, maybe in his wheelchair, since I don’t think Jordan would stay settled for anybody else. (Besides – crying, autism meltdowns, physical aggression, and stripping naked probably are well beyond their ability to handle) I figure Daniel will absorb into a 2-4 year old class alright and Carolyn would be with him.
Then things started falling apart. First, Jordan started crying in the car. A lot crying. Autism meltdown crying and I couldn’t figure out what was wrong. Holding his hand didn’t help. Asking him to be quiet didn’t help. Playing his favorite music didn’t help. He was red in the face, screaming and ramming his head against the window. The girls are stressed by this, but did pretty good. Daniel did not. He kept yelling, “Jordan. Nooo!!” and crying. Any few minutes of Jordan not crying, Daniel was demanding toys that weren’t even in the car and raging (you know a good little toddler stomping, screaming fit) when we didn’t have it. Yeah. The boys were clearly experiencing really high stress. And I couldn’t fix it. And I was trying to drive.
We got there. Jordan continued to melt down even in his stroller. So I guess it wasn’t the car causing the problem.
It’s so emotionally hard to see the child you love in such emotional pain.
Jordan was in the wheelchair and Daniel was in my front carrier, sitting sideways in my oversized ergo. The girls took turns pushing Jordan with me and we trooped in, for better or worse. Daniel started fussing and asking for things he couldn’t have and Jordan eventually melted down. I fed Jordan lunch on the floor in the hall while the director told me that it’s against policy to go to exercise classes with children with you and she didn’t know if an exception could be made for us. We cut the tour short and I dug into my backup-feeding-tube-supplies and fed Daniel lunch while a wide-eyed employee handed me the YMCA booklet.
Y’all. I have practiced acceptance of limitations for years. I’ve been Jordan’s mommy for over six years. But this one kicked my butt for some reason. Maybe it’s because it’s new for me to not be able to take my kids somewhere on my own. Maybe it’s because I had gotten my hopes up too high for something that I knew ahead of time was outside our family’s natural sphere. But this I know: It is okay for me to grieve. It is okay for me to be sad about the things I have lost along with what my sons have lost. I don’t have to be a superhuman and just be rainbows and unicorns about everything. Because some things in life hurt.
The rest of that day were a deep, painful depression. The next day was fatigue and recovery. And as time goes on, I’m getting back to happy.
Happy’s a funny thing. Because life is full of suffering as well as pleasure. I don’t resent suffering, nor do I pursue pleasure to the exclusion of everything else.
I listened to a program on NPR some months ago, where a family was being interviewed. The family had three children, including a child with mild autism and a son more severely affected by autism. One of the peculiarities of this family is that they cannot close the bathroom door when the go to the bathroom or the brother freaks out. The man doing the interview kept angling his questions towards drawing out negative feelings and negative attitudes about living together with an autistic person. I could just slap the guy! NPR likes to put a lot of value on humanitarian ideals. I appreciate that. So since when does your brother experiencing a disability become something we should complain about? Aren’t all people intrinsically individual? Isn’t it our deep desire to be loved and accepted just as we are? How would we want to be thought of if we were the one “born that way?”
A better goal than the pursuit of happiness is the pursuit of loving others as we love ourselves. That means we need to love and care for ourselves. And it means being willing to be together with our fellow humans in their suffering/weirdness/peculiarities/struggles/aspirations/success. It’s that empathy thing.
Okay – that’s all the soapbox for today.
I realized that I am running a home with a preteen, an 8-year-old, a 5-year-old, a toddler with trust issues, and an infant. Jordan is really like an infant right now… his emotions are unpredictable and there is crying for no reason and I have to drop things and go sit with him at any given time. Daniel has crises of identity on regular intervals and I have to drop everything and go sit with him for a bit. I give myself permission to consider myself awesome.
You are totally awesome! Rants like this are so needed and perfectly acceptable… I few thoughts I had while reading, that probably are not something you have not already thought about, but lately I have been big about trying to fit in things that make me happy, because as a mom of many, its hard to have even a minute a day to yourself… My current goal is a couple hours a week, usually on the weekend when daddy can take over. But I am hoping in the future as friendships are established that I may be able to have something to myself during the week. Anyway my thought for you, is do you have any fellow mommies who know your kids and enjoy spending a couple hours a day with them, who would be willing to do a “mommy time” exchange…. You know they bring you their kids (should probably limit it to those who have a number of kids you would be okay returning the favor for) and you watch them for a couple hours once a week. Then in return they watch yours on another day so you can go to the gym (or whatever activity you want to tackle) This of course would still give you the flexibility of taking the other kids with and dropping into the YMCA daycare and those sweet boys of yours who get more stressed could stay home with a familiar face?
Again, I am sure you already thought of this, but my new thing is really to get moms to realize they NEED some self care me time! I hope you find a way to make it work that is stress free (or mostly stress free) for all!